Fernando A. Atik et al. Paulo Manoel Pego-Fernandes Juan A. Mejia Livia A. Goldraich … Fabiana G. Marcondes-Braga Estela Azeka Fernando Augusto Figueira Valter Duro Garcia Luciana Haddad Wida Cherikh Josef Stehlik Rebecca Cogswell
Since 1983, data of more than 220,000 heart, lung and heart-lung transplant recipients from 481 heart transplant centers and 260 lung transplant centers in 47 countries have been submitted to the International Society for Heart and Lung Transplantation (ISHLT) Registry. The ISHLT Registry mission is to improve the care of patients with advanced heart and lung disease. The ISHLT Registry has engaged members from diverse regions, provided outcome data from thoracic transplants worldwide and catalyzed scientific and clinical collaboration. Ten Brazilian hospitals used to participate in the ISHLT Registry in the past. During this period, some problems were observed. First, there was heterogenous commitment among participating centers to the complete dataset. Second, there was lack of human resources in some hospitals dedicated to the Registry. Third, data collection was each center’s responsibility and submission of the data to the ISHLT registry was not mandatory.
In 2021, the ISHLT Registry was interrupted due to new data sharing regulations and data collection approaches. Data fields and data upload process were updated. In 2024, the ISHLT Registry began to exchange data only with national and regional registries, such as United Network for Organ Sharing and Eurotransplant, and no longer with individual hospitals or institutions.
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